Get your boots on!
Approaching deadlines for 
 2017 MTM-CNM Family Conference Attendees
2015 Group Photo
Photos, Family Stories, Professional Bios due July 1st

One of our conference traditions is to provide a booklet with the conference agenda and schedule, along with family and professional bios and photos.

In order to finalize the booklet and get it to the printer in time for the conference, we need these stories and photos as soon as possible. 

Of course, it is optional to send in a family story and photo, however, we wouldn't want anyone left out who wanted to be included...so please e mail them to  [email protected]  with the subject, "Family Bio and Photo: [Family Name]." Thanks!
Registration Deadline, July 4th

We are now accepting late registrations with an updated fee schedule as follows:

Individuals diagnosed with MTM/CNM...............................Free
Adults 18 and over..................$125
Children 12-17.........................$65
Children 4-11...........................$40
Children 0-3............................Free

There will be no onsite registration, so if you plan to attend, please register here.

All registration payments are due by July 7th.
RARE Bears, Request by July 4th.

Paley and his RARE Bear
In order to receive a RARE Bear at the 2017 MTM-CNM Family Conference, please download the form HERE, complete, scan, and attach it in an email to [email protected] by July 4, 2017, so we can ensure that the bears are made and shipped to the hotel by the conference date. 

***IMPORTANT INSTRUCTIONS*** Although the RARE Bear Request form provides the email for [email protected], RARE Science has asked us as collaborators in this project to collect the forms to facilitate the shipping and delivery of the bears. So please email the completed form to [email protected] to receive the bear at the conference.

For any parent(s) attending the conference without the affected child, you may still fill out a request form and bring the RARE Bear home to your child.

Onsite Opportunities to Participate in Research, Email/Call Study Contacts Soon!

Dr. Alan Beggs of Boston Children's Hospital and Harvard Medical School will be collecting data for two studies at the Conference, the Molecular and Genetic Studies of Congenital Myopathies and the MTM1 Carrier Study, read more here. 

Contact Info for these studies: 




As we shared in this previous newsletter , Dr. Barbara Smith along with her team from the University of Florida Team will be conducting a  Respiratory Study  and  Carrier Study  as part of the Rare Disease Longitudinal Observational Study. 

Email  Lee Kugelman, or call  352-273-6855, for more information.





Nationwide Children's Hospital is also joining us again for this year's Conference. They are  looking for individuals with X-Linked Myotubular Myopathy (XLMTM) and non-affected siblings and parents to test 2 new tools to see if they can measure how well you can move.  
 
For more information, see:
 
If you would like to participate in these assessments, please email  Maggie Dugan, or call 614-722-6881 for more information or to sign up for an appointment (Thursday, Friday, or Saturday, July 23-25).
 
*You can also stop by or contact one of their team members at the conference to make an appointment. 



The Home Respiratory Care team at Philips is developing a new ventilator, and they are looking for feedback on the design from caregivers of ventilator patients.  They will be conducting a usability evaluation at the MTM-CNM Family Conference on Thursday 7/20 and Friday 7/21.  Please email [email protected] if you are interested in participating.
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Memorial Photos for Reflection Room, due July 7

We want to honor the memory of all our community's loved ones in our Reflection Room, a special place reserved in honor of our "angels."  You do not need to be attending the conference to have a photo included.  Email the photo along with the birthday and angel date to  [email protected] with Subject, "Reflection Room."

We remember. We hope. We love.

MTM-CNM Family Connection, Inc. |  Email | Website